Worrying changes in my husband

My husband has had Ppms for 16years and he is a permanent wheelchair user.

The past 9 months has been difficult, he has has one UTI after another, now on antibiotics permanently.

He has trigeminal neuralgia which was under control with tegretol but flared up last November and he hardly ate for weeks and lost lots of weight. GP prescribed pregabalin with tegretol and seems to be working. He is eating better now. I am worried because he has become very confused and disoriented. He has forgotten how to use his power chair, I have too prompt him all the time but this doesn’t seem to help. He has lost interest in everyday things, he just sits in his wheelchair, he cannot follow tv programs, something he enjoyed was a good drama, but he loses the plot now. He always read in bed but the past few nights he hasn’t wanted to. He is sleepy and lethargic in the day and has no interest in anything. It’s like he, or his body has given up. I have mentioned the forgetfulness and confusion to ms nurse and neurologist but they say its not dementia, it’s the MS. It has got worse since then and I feel helpless and don’t know what to do. Help please.

Once upon a time, through a strange country, there rode some goodly knights, and their path lay by a deep wood, where tangled briers grew very thick and strong, and tore the flesh of them that lost their way therein. And the leaves of the trees that grew in the wood were very dark and thick, so that no ray of light came through the branches to lighten the gloom and sadness.

And, as they passed by that dark wood, one knight of those that rode, missing his comrades, wandered far away, and returned to them no more; and they, sorely grieving, rode on without him, mourning him as one dead.

Now, when they reached the fair castle towards which they had been journeying, they stayed there many days, and made merry; and one night, as they sat in cheerful ease around the logs that burned in the great hall, and drank a loving measure, there came the comrade they had lost, and greeted them. His clothes were ragged, like a beggar’s, and many sad wounds were on his sweet flesh, but upon his face there shone a great radiance of deep joy.

And they questioned him, asking him what had befallen him: and he told them how in the dark wood he had lost his way, and had wandered many days and nights, till, torn and bleeding, he had lain him down to die.

Then, when he was nigh unto death, through the savage gloom there came to him a stately maiden, and took him by the hand and led him on through devious paths, unknown to any man, until upon the darkness of the wood there dawned a light such as the light of day was unto but as a little lamp unto the sun; and, in that wondrous light, our wayworn knight saw as in a dream a vision, and so glorious, so fair the vision seemed, that of his bleeding wounds he thought no more, but stood as one entranced, whose joy is deep as is the sea, whereof no man can tell the depth.

And the vision faded, and the knight, kneeling upon the ground, thanked the good saint who into that sad wood had strayed his steps, so he had seen the vision that lay there hid.

And the name of the dark forest was Sorrow; but of the vision that the good knight saw therein we may not speak nor tell.

The day has been so full of fret and care, and our hearts have been so full of evil and of bitter thoughts, and the world has seemed so hard and wrong to us. Then Night, like some great loving mother, gently lays her hand upon our fevered head, and turns our little tear-stained face up to hers, and smiles, and, though she does not speak, we know what she would say, and lay our hot flushed cheek against her bosom, and the pain is gone.

Sometimes, our pain is very deep and real, and we stand before her very silent, because there is no language for our pain, only a moan. Night’s heart is full of pity for us: she cannot ease our aching; she takes our hand in hers, and the little world grows very small and very far beneath us, and, borne on her dark wings, we pass for a moment into a mightier Presence than her own, and in the wondrous light of that great Presence, all human life lies like a book before us, and we know that Pain and Sorrow are but the angels of God.

Only those who have worn the crown of suffering can look upon that wondrous light; and they, when they return, may not speak of it, or tell the mystery they know.

Extract taken from Three men in a Boat by J. K. Jerome

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Dear Chrissy,

Is the pain and the medications making your husband depressed? I have been on anti-depressants since 2010 (amongst other meds). Life is still a struggle but it does help me to feel better equipped to tackle the ‘slings and arrows of outrageous fortune’ .

With MS we all need to develop our personalised coping mechanisms. In my case it is an amalgam of drugs and exercise. Specifically, a mind exercise like tai chi, yoga or pilates. It takes a lot of time to find the right balance. This is all the more difficult as our symptoms are continuously changing. It’s always two steps forward, one step backwards.

It’s thoroughly disheartening and it’s tough. It’s really, really tough.

Do you have any support from you local MS Group? I feel that you need to talk to someone. The Forum has it’s limits.

If you’ve already tried the above, you will have to go though it all over again. And this is Shit.

A.

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Hi Chrissy, sending you a pm.

pollx

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Hi I have relapse and remitting ms but like your husband i had constant urine infections one after the other I am now resistant to trimethroprim and nitrofurantoin i after being on them help prevent infections but it didnt stop them i had one inf after the other i was eventually referred by my gp to a lovely urologist who has put me on self catheterising regime to ensure my bladder is being correctly emptied i now do this 4 to 5 times a day and have now been infection free for just over a year.

during my constant infection I became really confused, doing strange things like putting diluting juice in the washing machine instead of comfort remote control in the fridge I also became a bit distant staring into space not watching tv as I lost concentration and forgot what the program was about I was tired didn’t speak much and actually didn’t really bother with anything going on around me the house could have been on fire and I still probably wouldn’t react it seemed like I was depressed but it was the urine infections they really took it out of me made me so confused fatigued and in a bit of a haze now I’m not having the urine infections its like someone has switched me back on if your husband is suffering constant urine infections it may be causing some of his symptoms to be worsened.

I thought id send u a hug and to let you know you are amazing and doing the best for him its sometimes harder for my partner than it is for me but trust me we appreciate all you’s do for us !!!

Claire x

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Hi Claire, sorry for the delay in replying, so much going on here at the moment. He has pressure sores now…district nurses coming in every day.

Thank you so much for your reply and I can certainly empathise with you too, my husband has been through the same as you and it is somewhat frightening that an infection can affect your whole body (and mind). He self catheterised for nearly 3 years with no problems but the last 6 months has been constant infections. He went into hospital with pneumonia 3 weeks ago, and came out having be given an indwelling catheter. They thought this would be better for him, but now I am wondering whether he has another infection, he is on low dose ong term antibiotics (which is’nt a good thing, when you hear all about over use of antibiotics), so I thought this would stop further infections. Will get it checked out.

Hugs and love to you Claire. Thank you again for taking the time to talk to me. All the best to you and hubby, keep strong and positive.

Chris xx

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Hello Chrissy,

Just my twopennorth, for what it’s worth. I’d be inclined to think that the Tegretol and Pregabalin would be causing this and would suggest you ask the neurologist for an alternative.

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Hi Amethystina

Thank you for your ‘twopennorth’, it is much appreciated. I will certainly be looking into my husbands medication combination with the MS nurse, who we will be seeing soon. Any suggestions, help, support or just knowing there are people out there, like you, is worth much more than tuppence!! Thank you and hope you are OK.

xx

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Hi Chrissy, let me know how he gets on I hope the specialists come up with something to help in the meantime keep ur chin up and sndn u a hug Claire x

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Hi, my husband has Ppms and has been in hospital again with uti and pneumonia and developed sepsis and was very ill. He was in for nearly 3 months. He is home now but because of pressure sore and risk of pneumonia he has to be turned ever 4hours. I have care coming in 4 times a day to help but i have to do thru the night 1 am and 5am. I am exhausted,any advice from someone who has or is going thru this?

Chris xx

You’re welcome. Have SPMS myself but thanks to the love and care of a good husband, doing very much ok.

Co incidentally I had to attend my MS emergency clinic today at the request of my husband who had done his own homework on the impact on the challenges of Growing Old With MS having been diagnosed in 1991 . More to follow on that in the future as we’ll be away for a week. Enough about my situation but hope you get a resolution over yours.

Wishing you all the very best in the meantime :slight_smile:

My husband also has PPMS since 2003.

Recently he also has confusion and not because ~UTI’s the consultant says it is Cognitive issue.

In fact he said if you imagine a piece of cheese with lots of holes that is my husbands brain. The holes are the lesions.

Read here this may explain https://www.mssociety.org.uk/what-is-ms/signs-and-symptoms/memory-and-thinking/cognitive-problems

My husband last year didnt know who i was for 30 mins then that memory came back. No infection just the lesions.

His speech is slower at times as he word finds and if I ask him the year he wouldnt be able to tell me.

All the best

Hi Chris,

You are asking for more help. Is it emotional or practical support you need? Or both.

Have you spoken to your local authority about what support they can offer? You might need an update on your assessment or husband’s Care Plan.

There are the Support pages on this website for basic information but for a more detailed answer you’ll have to give more information.

Regards,

Anthony